Hello I am new here

[Guest guest]

I personally never heard of anyone getting acne from it, but then again,

everyone is different. I never had. I haven't had any bad side effects from it

at all. I lost ten pounds since I started it. It seems to decrease my appetite a

tad.

Colleen

jennlawton <jennlawton@...> wrote:

I just started lexapro about 4 weeks ago and am worried about side

effects....my doctor is

having me medically tested for hormones and thyroid just to rule out any medical

reasons as

well as putting me on the meds. I am only taking 5 mgs because of the fear of

side effects. I

know that sounds awful but I hear all these people say they have gained 20 lbs

and cannot

get rid of it......has anyone not had problems like this who has been on it long

term. Also I

hear it causes acne....I did not have acne as a teenager....when I turned 30 I

started getting

adult acne so I was put on doxycyclline and it helps control it but I have heard

that Lexapro

can cause problems with my skin....anyone experience this....thanks for your

help and if I can

help anyone else just let me know. All this sounds so bad I want to get better

so please don't

think I am just a shallow person

[Guest guest]

Welcome to the Lex board. Please understand that since

we are all different we have different reactions to

the same meds. I have been on it for over 3 and I have

never had a problem with acne. The good news is if

it's helping keep going with it. If it does not help

or you have side effects you can't deal with then try

something else. There is good and bad in most if not

all drugs.

ak

--- jennlawton <jennlawton@...> wrote:

> I just started lexapro about 4 weeks ago and am

> worried about side effects....my doctor is

> having me medically tested for hormones and thyroid

> just to rule out any medical reasons as

> well as putting me on the meds. I am only taking 5

> mgs because of the fear of side effects. I

> know that sounds awful but I hear all these people

> say they have gained 20 lbs and cannot

> get rid of it......has anyone not had problems like

> this who has been on it long term. Also I

> hear it causes acne....I did not have acne as a

> teenager....when I turned 30 I started getting

> adult acne so I was put on doxycyclline and it helps

> control it but I have heard that Lexapro

> can cause problems with my skin....anyone experience

> this....thanks for your help and if I can

> help anyone else just let me know. All this sounds

> so bad I want to get better so please don't

> think I am just a shallow person

>

>

[Guest guest]

You can be aware of and concerned of the side effects

but don't fear something you may never experience. I

say this because not everyone experiences the same

side effects. I know I don't. Enjoy the experience of

feeling better.

ak

--- jennlawton <jennlawton@...> wrote:

> I just started lexapro about 4 weeks ago and am

> worried about side effects....my doctor is

> having me medically tested for hormones and thyroid

> just to rule out any medical reasons as

> well as putting me on the meds. I am only taking 5

> mgs because of the fear of side effects. I

> know that sounds awful but I hear all these people

> say they have gained 20 lbs and cannot

> get rid of it......has anyone not had problems like

> this who has been on it long term. Also I

> hear it causes acne....I did not have acne as a

> teenager....when I turned 30 I started getting

> adult acne so I was put on doxycyclline and it helps

> control it but I have heard that Lexapro

> can cause problems with my skin....anyone experience

> this....thanks for your help and if I can

> help anyone else just let me know. All this sounds

> so bad I want to get better so please don't

> think I am just a shallow person

>

>

[Guest guest]

Hi Christy,

I was diagnosed a few years ago at age 40. I've had PT, chiropractor,

see an orthopedic surgeon and have seen a neurosurgeon. I have

moderate stenosis in L4 and L5. All agree that I am not to the point

of surgery. I have had the epidural injections which did help me.

Right now I'm on a combination of meds of nabumetone(NSAID) and

baclofen. That has been very helpful and is continuing to work after

almost a year. I have to be careful and watch what I do and take it

easy. I think the most important thing is to fine a good doctor that

you trust. My doctors are not for surgery even though they are both

surgeons. They believe that should be the last alternative. Good luck

to you.

Nessie

>

> I am a health mess but my most recently I was diagnosed with

> Spinal Stenosis,about 2 weeks ago now.I have been disabled since

> about 2001.My long time dreams were to farm and my second husband

> made it possible for me in 2002.

> I am 34 years old terrified because I know I may not be

> mobile in the next ten years and I am an animal lover and an outdoor

> type person.Can anyone walk me through the process?

> Terrified Christy

>

[Guest guest]

Well I trust my MD,even though I think it sucks that he decided to tell me I have Spinal Stenosis via the mail.He has sent me to 2 different "back specialists" but I dont think either one was a neurosurgeon.Both wanted me to go through therapy even though I had already gone through therapy on three seperate times.It didnt do much good but that all was before the Spinal Stenoisis.I am stupid for saying I dont want more therapy because I went through therapy on 3 seperate times? And one want to give me cortisone shots and people came out of the wood work telling me not to do it.So I was nervous enough,I didnt do it.Before Christmas of '07 my MD said I was not a canadate for the shots because my pain is just too widespread,that was before the last MRI on Jan 4th.And the shots are one of the treatments early on for Spinal Stenosis ( mine is lumbar) I go rid of 90% of my farm.I am down to 8 muscovy ducks,and 12 chickens.But I still have 2 house dougs over 70

pounds,2 house dogs in the 60 pound range,and a house dog about 30 pounds.And 3 cats one,is 18 pounds.I am used to being active but how do I do this without straining myself when I am so used to heavy lifting and such?Anyway thank you for atleast answering me. ChristyNessies Computer <stitchangel@...> wrote: Hi Christy,I was diagnosed a few years ago at age 40. I've had PT, chiropractor, see an orthopedic surgeon and have seen a neurosurgeon. I have moderate stenosis in L4 and L5. All agree that I am not to the point of surgery. I have had the epidural injections which did help me. Right now I'm on a combination of meds of nabumetone(NSAID) and baclofen. That has been very helpful and is continuing to work after almost a year. I have to be careful and watch what I do and take it easy. I think the most important thing is to fine a good doctor that you trust. My doctors are not for surgery even though they are both surgeons. They believe that should be the last alternative. Good luck to you.

Nessie>> I am a health mess but my most recently I was diagnosed with > Spinal Stenosis,about 2 weeks ago now.I have been disabled since > about 2001.My long time dreams were to farm and my second husband > made it possible for me in 2002.> I am 34 years old terrified because I know I may not be > mobile in the next ten years and I am an animal lover and an outdoor > type person.Can anyone walk me through the process?> Terrified Christy>Shirey's Sink or Swim FarmUpper Penninsula of MichiganBetween Marquette and Escanaba

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Welcome to the group. I know it can be tough specially when it comes to smoking

family members. I refused to have my younest son around smokers even if it meant

that we didn't go to the family dinner. I did that one year because it was at a

smokers house and I, not knowing what exactly to expect, kept him from it

becuase we were within a week of sinus surgery so I didn't want anything to mess

that up. This same family member talked to me the next year and assured me that

she didn't smoke in the house nor around other people so I went and it wasn't a

problem. At that time he could not be around any kind of smoking at all or he

would end up on prednisone.

cassie

Future Director of the Charismatic Carolers

www.marykay.com/cassieredinger

[Guest guest]

Welcome! I have two boys with Shwachman-Diamond Syndrome. Here is a link

to our family website, if you are interested. www.shwachman.50megs.com

<http://www.shwachman.50megs.com/> both of my SDS boys also have GERD and

other health problems.

God bless you today. May He make you a blessing to others!

Pattie

[Guest guest]

Hello ,

no I haven't been in touch with anyone at Duke(I don't even know where

it is) we are currently working with one of our pediatrician's that

took care of Aidan's mom when she was little...she is wonderful and so

easy to talk to and she understands that she needs to talk to both

Aidan's mom AND me as I am the glue that keeps it together...and also

with several specialists at childrens hospitals in mpls/st paul...

Beth(Aidan's mom) does so much of the parenting but she tends to get

scared and frustrated with the medicines and feeding times and thats

why I do that stuff for now) and I am sure as time goes by she will be

more confident and capable...I just wish the father would have stuck

around to see what a wonderful joy he is missing out of and I hope

someday he realizes what a burden he placed on us all when he bailed

out...and when I say burden I don't mean my grandson...I mean the 24/7

care of a special needs child in general...its hard ya know?

I try really hard to remember that Aidan is my grandson and not my

son...I make sure I tell him the grandma is (fill in blanks) and mommy

is getting(fill in blanks) so he doesn't end up thinking I am his

mom...but it is hard at times when its 3-4 am and he has been crying

for an hour to be thinking coherent and I slip at times and say mommy

knows(meaning me) and I hope he doesn't get confused...I don't want to

be his mom...I want to be his gramma...his mom is so exhausted all the

time with her own health issues and special needs...I just feel so

overwhelmed sometimes...*sigh*...

if anyone has any hints/tips I would be glad to hear them...i just

hope you all are nice and not try to be judgmental cuz I can't handle

that right now...and I am not trying to be judgmental myself but I

have been hearing from well intentioned family and such that Beth

needs to do this and that and they think in their perfect world of

their imagination that everyone is as smart and capable and natural

parents as they are...

reality is that my daughter has her own special needs and now she is a

parent of a special needs child...a tough row to hoe...

>

> Welcome, .

>

> You mentioned that your grandson lacks a thymus. Have you been in

touch with anyone at Duke?

>

> If you have questions about support groups, or want to learn more,

contact the IDF. Buckley (from Duke) is on the Medical

Advisory Committee.

>

>

> mom to Dani, CVID, 6

>

>

>

>

>

>

[Guest guest]

I do not know for sure but I have heard in some arenas that they are using

probiotics in infants to help with some of the motility and Gerd issues. Also

some digestive enzymes. I wish I could give you an article but you might check

with Bastyr Natropathic college in Seattle. Also the med Motillium or

Domperidone which is available in Canada and Europe for years but is not

available in US It is very much like Reglan but without the side effects an

seems to work better overall. I have Gastroparesis ( paralyzed stomach and I

order the Domperidone from the UK and it helps me immensley. I am not suggesting

you do that what I am suggesting is that you see how GERD is being treated

internationally and it may be something to put in your arsenal if you get the

information together and your docs agree. My GI doc has had it compunded for me

but it is too expensive since my insurance will not pay for it since it is not

FDA approved so I get it in the UK for about

20% of the price even with shipping. Just some areas you may be able to do some

further research . I will also see what I can find. My daughter has severe

Gerd. She is 17 and is now pregnant and it is really getting her fits. So we can

empathize. So sorry he is having to go through so much. Your family will be in

my prayers.

BARBIE

hello I am new here

I am the caregiver of my daughter and her son both of whom have GERD

and other health problems(Di' s sequence, PID, asthma, ASD & VSD

and many infections in the lungs: bronchitis, pneumonia, RSV...I am in

charge of medications and

feedings for my grandson.... my daughter is almost 21 and has a lot of

medical issues

the least of which is GERD...she had a nissan-fundoplicati on done when

she was 4 months old and since then has had some problems but nowhere

near the ones my 11 week old grandson has now...the surgery helped her

a whole bunch but the GERD did permanent damage to her throat and

nasal passages...she has a very high pitched nasal quality to her

voice and has had multiple surgeries on her nose and sinus cavities to

help her...

my grandson at 11 weeks old is getting rice cereal in his formula and

is on 15mg of prevacid twice a day along with bactrim and iron and

nebulizer treatments for asthma....we have so many problems with his

feedings and sleeping...we have a danny sling in his crib but because

he refluxes so much we cannot even use it...we have to be within a

foot of him at all times to help him calm down after the acid burns

his nose and throat...he has aspirated so many times and has been

hospitalized 4 times since he was born for a week or more at a time...

I am hoping we can get support and friendships here...and all of the

messages I have read so far give me the impression we will like this

group....

I am not sure of the labels for immune problems but my grandson was

born with no thymus gland and his parathyroid and thyroid are not

performing so his t cells are low?(hope I explained that right?) I am

battling with family members who smoke around him and who think a flu

shot and current immunizations for their kids are too much to ask of

them...and then when I tell them we cannot come over or they cannot

come over they get upset with me...but they need to understand I am

protecting his health and they just dont get it...

I am joining several groups here looking for support so feel free to

let me know if I may see you in another group

thank you for letting us join in!

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________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I have been with this group since my son was 3 and he is now 13 and except

for a couple of personality bleeps this is a wonderful group of parents who

genuinely care. Generally all discussion is regarding our kids, grandkids and we

are able to share our needs and concerns openly and with great supportive

responses. I have been amazed by the quality of information share and the

committment everyone displays in regards to learning how to better understand or

care for their children. Immune Deficiency as you know is complex and a rapidly

changing field. We all want the best for our kids and are reaching out to find

what it takes to advocate for our kids. Welcome and feel free to post concerns,

questions, frustrations and your own depth of experience and knowledge to help

someone else who has only begun this roller coaster ride. It seems that you will

have much to offer with your time of raising hour daughter and now the next

generation. There are

several families with De Syndrome. I am wondering is your grandson on

IVIg??? Has he been evaluated at a large medical Center??? I know there are many

excellent programs across the country and if you have not yet I would encourage

you to contact the Immune Deficiency Foundation for a great resource of info and

referrals. I do not have the number in front of me but I am sure you can get it

off of the Groups resource pages. Let us know if you need any help.

BARBIE

Re: hello I am new here

Hello ,

no I haven't been in touch with anyone at Duke(I don't even know where

it is) we are currently working with one of our pediatrician' s that

took care of Aidan's mom when she was little...she is wonderful and so

easy to talk to and she understands that she needs to talk to both

Aidan's mom AND me as I am the glue that keeps it together...and also

with several specialists at childrens hospitals in mpls/st paul...

Beth(Aidan's mom) does so much of the parenting but she tends to get

scared and frustrated with the medicines and feeding times and thats

why I do that stuff for now) and I am sure as time goes by she will be

more confident and capable...I just wish the father would have stuck

around to see what a wonderful joy he is missing out of and I hope

someday he realizes what a burden he placed on us all when he bailed

out...and when I say burden I don't mean my grandson...I mean the 24/7

care of a special needs child in general...its hard ya know?

I try really hard to remember that Aidan is my grandson and not my

son...I make sure I tell him the grandma is (fill in blanks) and mommy

is getting(fill in blanks) so he doesn't end up thinking I am his

mom...but it is hard at times when its 3-4 am and he has been crying

for an hour to be thinking coherent and I slip at times and say mommy

knows(meaning me) and I hope he doesn't get confused...I don't want to

be his mom...I want to be his gramma...his mom is so exhausted all the

time with her own health issues and special needs...I just feel so

overwhelmed sometimes... *sigh*...

if anyone has any hints/tips I would be glad to hear them...i just

hope you all are nice and not try to be judgmental cuz I can't handle

that right now...and I am not trying to be judgmental myself but I

have been hearing from well intentioned family and such that Beth

needs to do this and that and they think in their perfect world of

their imagination that everyone is as smart and capable and natural

parents as they are...

reality is that my daughter has her own special needs and now she is a

parent of a special needs child...a tough row to hoe...

>

> Welcome, .

>

> You mentioned that your grandson lacks a thymus. Have you been in

touch with anyone at Duke?

>

> If you have questions about support groups, or want to learn more,

contact the IDF. Buckley (from Duke) is on the Medical

Advisory Committee.

>

>

> mom to Dani, CVID, 6

>

>

>

>

>

>

[Guest guest]

" no I haven't been in touch with anyone at Duke "

Beth and Aiden are blessed to have you in their lives. (It may be a gift that

her partner did not stick around. An immature or unsupportive partner can

sabotage an already too complicated medication regimen, put the child in danger,

and become abusive if they are under too much stress.) Yes, most of us here

have done the 24/7. It is so difficult--but made much worse by an unsupportive

partner. Sometimes, a trusted babysitter is can do a better job and fill the

void--and this doesn't obligate you to leave the house. : )

I don't want to make life any more complicated for you but there is a strong

program of research at Duke for Di/thymus transplants. No one else does

this. I encourage you to call the Immune Deficiency Foundation and make sure

that your docs have considered all reasonable options for Aiden--as he is so

young and if transplant is one the table, the younger the better.

Take care,

[Guest guest]

,

Hello,

I'm from North Dakota and Doctor in MPLS at the U of MN. My son has a PID that

isn't well defined at this point. I would be happy to talk to you about options

in minnesota.

Have you contacted Kathy Antilla from the IDF. She lives in the MPLS area as

well. Her number is available through the IDF. I don't have her contact

information at this time.

My home # is 701-540-5108 or email me privately your number and I can call you

as I have unlimited long distance.

My home email is lmschatz@...

Re: hello I am new here

Hello ,

no I haven't been in touch with anyone at Duke(I don't even know where

it is) we are currently working with one of our pediatrician's that

took care of Aidan's mom when she was little...she is wonderful and so

easy to talk to and she understands that she needs to talk to both

Aidan's mom AND me as I am the glue that keeps it together...and also

with several specialists at childrens hospitals in mpls/st paul...

Beth(Aidan's mom) does so much of the parenting but she tends to get

scared and frustrated with the medicines and feeding times and thats

why I do that stuff for now) and I am sure as time goes by she will be

more confident and capable...I just wish the father would have stuck

around to see what a wonderful joy he is missing out of and I hope

someday he realizes what a burden he placed on us all when he bailed

out...and when I say burden I don't mean my grandson...I mean the 24/7

care of a special needs child in general...its hard ya know?

I try really hard to remember that Aidan is my grandson and not my

son...I make sure I tell him the grandma is (fill in blanks) and mommy

is getting(fill in blanks) so he doesn't end up thinking I am his

mom...but it is hard at times when its 3-4 am and he has been crying

for an hour to be thinking coherent and I slip at times and say mommy

knows(meaning me) and I hope he doesn't get confused...I don't want to

be his mom...I want to be his gramma...his mom is so exhausted all the

time with her own health issues and special needs...I just feel so

overwhelmed sometimes...*sigh*...

if anyone has any hints/tips I would be glad to hear them...i just

hope you all are nice and not try to be judgmental cuz I can't handle

that right now...and I am not trying to be judgmental myself but I

have been hearing from well intentioned family and such that Beth

needs to do this and that and they think in their perfect world of

their imagination that everyone is as smart and capable and natural

parents as they are...

reality is that my daughter has her own special needs and now she is a

parent of a special needs child...a tough row to hoe...

>

> Welcome, .

>

> You mentioned that your grandson lacks a thymus. Have you been in

touch with anyone at Duke?

>

> If you have questions about support groups, or want to learn more,

contact the IDF. Buckley (from Duke) is on the Medical

Advisory Committee.

>

>

> mom to Dani, CVID, 6

>

>

>

>

>

>

[Guest guest]

Hello ,

My name is Natatlie and I have a son named who is 3 and has

a PID plus other things. I live in the Twin Cities. My son also go

the St Childrens. Please feel free to email me off line and we

can talk.

His caringbridge link is: www.caringbridge.org/visit/matthewfranson

: Proud Mom to 3 yr old with common immune deficiency

and etc......

> >

> > Welcome, .

> >

> > You mentioned that your grandson lacks a thymus. Have you been in

> touch with anyone at Duke?

> >

> > If you have questions about support groups, or want to learn more,

> contact the IDF. Buckley (from Duke) is on the Medical

> Advisory Committee.

> >

> >

> > mom to Dani, CVID, 6

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome! You will certianly get support here. There are so many Moms that

have helped me. I will be praying for your family. It is so hard to explain to

others that you are not being a germaphobe because you are overreacting. My SIL

still brings her sick kids over. She will give them Tylenol and Robitussin

before dropping them off and when it wears off, she will say she doesn't know

they are sick. Last time she did it, my son ended up in the hospital for 6 days.

You have to stand firm because you are the only advocate for your child.

OK, off my soapbox LOL! Welcome, it sounds like this is something you have

handled before. I look forward to your wisdom also.

www.caringbridge.org/visit/alexsmith

_________________________________________________________________

Connect and share in new ways with Windows Live.

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[Guest guest]

,

I just spoke with a friend and she suggested contacting Dr. Louise Market, if

you want more info about possibilities for Di.

http://www.sciencedaily.com/releases/2007/05/070515174906.htm

(919) 684-6263 -- this number may be out of date, but someone there should know

where to find her.

[Guest guest]

Hi Di

My name is Leanne and I also live in Queensland, Australia on the Gold

Coast.

After reading your post I am so happy, you see I was diagnosed last

November with Reactive Arthritis and I have felt so alone because I

haven't been unable to find anyone else in Australia with Reactive

Arthritis. I have not had any success with finding an Australian

group for Reactive Arthritis, I contacted Arthritis Australia to no

avail and I have left messages on other illness forums not associated

with Reactive Arthritis asking if anyone knows anyone with Reactive

Arthritis could they contact me, still to no avail.I was so excited to

read your post and found that not only are you Australian you live in

the same state as I do!

I was diagnosed early last year with fibromyalgia, in November I was

admitted to hospital because I could barely walk, I was diagnosed with

an Upper Urinary Tract Infection and wasn't discharged from hospital

until four weeks later. My knees and ankles swelled to double their

normal size and I got eyeritis in my left eye. It took nine days

before I was given an official diagnosis, by the time day 8 arrived I

had worked myself up into an emotional frenzy because I thought I was

dying of a mystery illness. My left thigh started becoming numb a few

days after being in hospital and then eventually it went from numb to

a electric shock type of feeling and increased by day 8 to feeling

like it was on fire causing me to cry because of the pain. My right

elbow became very swollen too. My back which I had never had problems

with before was often and very suddenly giving me spasm attacks which

also made me cry with the pain. I have never experienced pain like it

in my life and now know what it means when I've heard people say they

cry out in pain. I felt my whole body was collapsing and even with a

team of four specialists i.e. rheaumatologist, opthamologist,

infectious disease specialist and gynaecologist and their staff of

five other doctors they couldn't come to a decision as to what was

wrong with me until day 9. I was diagnosed with Reactive Arthritis,

Entrapped Nerve in the left thigh, a possible spinal infection and

tendonitis in my elbow and a fibromyalgia flare up. During the month

I was in hospital I had four upper urinary tract infections.

I was told a third of the people who get Reactive Arthritis never get

it again, a third have occasional flare ups and the remaining third

have it ongoing for the rest of their life. Unfortunately I was told

last week by my rheaumatologist that I'm in the ongoing category.

I've been lurking on this forum for most of this year but found I was

having difficulty relating to others on this forum because America

tends to have a different view on Reactive Arthritis than what

Australia seems to and I was having trouble understanding some of the

things the lovely people on here talk about relating to Reactive

Arthritis.

I would very much appreciate it if you would email me and if you don't

mind give me your phone number. I'd love to be able to talk to

someone else who has Reactive Arthritis so I can learn to understand

it and live with it the best way I can.

For the Reactive Arthritis the medication I am on is, Pyralin

(Sulfasalazine) 500mg x 3 morning and night, and Celebrex 200mg x1

morning and night.

My email address is leanne_555@...

I'm unsure if will allow my email address to fully print out or

even if the moderators allow me to provide a personal email address

but under the circumstances I hope they can appreciate the hardship I

have experienced in finding a fellow Aussie with the same illness as I

and excuse me for breaking a rule. If my email address doesn't print

out then I will post another message with my phone number, I know it

isn't wise to put phone numbers on the web but desperate situations

call for desperate actions.

I look forward to hearing from you.

Leanne

[Guest guest]

I have Reactive arthritis also. I take sulfasalazine 500mg 3

morning and 3 at night. Also I take Cymbalta 60mg daily for

depression and chronic pain, along with several blood pressure meds.

Mainly I take sulfasalzine for my arthritis. I also have celebrex

but cannot take it often due to my high blood pressure.

Ive had ReA for about 16 months now, and I havent been pain free

yet. Although, the pain hasn't been nearly as bad as it was at

first. It started suddenly one day when my Lt foot was sore, like I

had worn a shoe that hurt the top of my foot, later that day I

couldn't put ANY weight on it at all. Incredibly painful. The next

morning the foot was hot, swollen and painful, with the Rt foot

starting to swell and get sore. Then a day or so later my Right knee

started to swell and get painful and hot. I saw a rheumatologist the

next day who tried to drain my knee, gave me prednisone, and order

tons of blood work. I started to get a swollen Rt index finger

also. Within a week he had diagnosed me with ReA. I am HLA-B27

Pos. My CRP and Sed rate were well over 100 at the time. They are

still above normal now, but I am MUCH better.

I still have alot of foot and ankle pain, along with neck and sacral

pain as well. But I have to bear with it. I am going to part time

work soon.

Sue

[Guest guest]

Oh dear....be VERY careful with that much Tramadol!!! Safe limits are

supposed to be 400mg/day...any higher risks neurological problems,

seizures/lowered seizure threshold, and permanent neurochemical

imbalances -- even cause severe depression, ironically!

You are taking 450-500mg/day-plus....Tramadol is one of the more

effective " low end " pain meds, and I often prefer it to Codeine/

Morphine, personally....but someone in as much pain as you deserves

far more adequate treatment.

These are good options to explore, IMHO:

*Opana ER/IR

*Dilaudid/Palladone/OSOR

*Fentanyl Patches (brand name Duragesic; generic version by Mylan) and/

or instant release Fentanyl: Fentora, Actiq

*Methadone

*Levorphanol

It sounds to me like your doctor(s) are prescribing the Tramadol based

on their own comfort regarding opiate paranoia...not what is best for

you.

Sent from my iPhone

[Guest guest]

Hi Di

My condition has run along very similiar lines to yours although Im not HLA-B27

pos which was a problem in the beginning as quite a few specialists did not

think people could be diagnosed with ReA without the genetic factor present -

how wrong they were!

My ReA was triggered by Giardia in 1989 and that flare lasted 4 months however

over the years until my latest flare (Nov2004) I had terrible problems with

sciatica and achilles pain - it all makes sense that it was related but at the

time I put it down to sport related injuries.

Anyway just to let you know I have made incredible progress with Remicade.

I was on most of the drugs you are taking and there was little if no improvement

in my condition until Remicade. My specialist is in Sydney and every 6 weeks I

have an infusion - I no longer take any other drugs - for me it is a miracle -

the 24/7 pain has gone and I do have twinges but that it nothing compared to

what it was prior.

This is a great site to gain information and support - it has really gotten me

through some very dark days indeed.

Regards

[Guest guest]

Hi Sue

Your reactive arthritis followed a very similar path to mine, I woke

one morning with a sore left ankle by the end of the day it was too

painful to walk on it, within a week both my ankles, my right hip and

my left thumb were all hot swollen and red and the pain was

unbelievable. And so began my long long journey and battle with ReA

and the subsequent spin offs to it.

I cannot take Celebrex or any NSAID, in fact there isn't a lot I can

take now although my doctor is always looking for something to work.

The latest flare of Ankylosing Spondylitis is acute and so much like

the ReA when it started - pain wise, really intense and making me

miserable - this morning it woke me at 3.30 am and I have been up

ever since (it is now almost 11.33pm Monday night).

It is very comforting to find people who know what you are going

through and to exchange ideas for treatment, what may work what may

not etc.

Thanks so much for replying to my post,

Di

[Guest guest]

Thank you so much for your warning and advice - I was on Morphine

(Kapanol) SR for five and a half years but when I moved state in 2003 I

was unable to get it here so was put onto Tramal. Until my doctor can

work out something more effective I will just have to take the Tramal

and be aware of the side effects you have mentioned - it is not an

ideal situation but living in a rural area doctors are few and far

between and there is no rheumatologist in the area at all, the closest

one is four hours drive away. My pain is not being managed at all well

and I don't really know what the next step will be - will just have to

get through as best as I can for now.

Thank you again for your help, it is much appreciated.

Di

[Guest guest]

Hello Di,

 

Welcome!  This is truly a great group in which we can all share and offer our

support for one another.  It has been a blessing to many of us here.  It sounds

like you're in a lot of pain right now, and I'll certainly pray for your

recovery. 

 

Wishing you all the best,

 

[Guest guest]

Hi Leanne,

 

I don't live in Queensland (I live on the other side of the planet in the ol' US

of A) but I read your post, and my heart goes out to you.  Just want to let you

know I'll be praying for you that you'll find relief from this disease and the

right medical doctors.  I know how frustrating it can be to be suffering so much

and no one can figure out what's wrong with you or what to do about it.  Hang in

there; you're not alone!  :-) 

 

 

From: Leanne <leanne_555@...>

Subject: Re: Hello I am new here

Date: Sunday, July 20, 2008, 10:22 AM

Hi Di

My name is Leanne and I also live in Queensland, Australia on the Gold

Coast.

After reading your post I am so happy, you see I was diagnosed last

November with Reactive Arthritis and I have felt so alone because I

haven't been unable to find anyone else in Australia with Reactive

Arthritis. I have not had any success with finding an Australian

group for Reactive Arthritis, I contacted Arthritis Australia to no

avail and I have left messages on other illness forums not associated

with Reactive Arthritis asking if anyone knows anyone with Reactive

Arthritis could they contact me, still to no avail.I was so excited to

read your post and found that not only are you Australian you live in

the same state as I do!

I was diagnosed early last year with fibromyalgia, in November I was

admitted to hospital because I could barely walk, I was diagnosed with

an Upper Urinary Tract Infection and wasn't discharged from hospital

until four weeks later. My knees and ankles swelled to double their

normal size and I got eyeritis in my left eye. It took nine days

before I was given an official diagnosis, by the time day 8 arrived I

had worked myself up into an emotional frenzy because I thought I was

dying of a mystery illness. My left thigh started becoming numb a few

days after being in hospital and then eventually it went from numb to

a electric shock type of feeling and increased by day 8 to feeling

like it was on fire causing me to cry because of the pain. My right

elbow became very swollen too. My back which I had never had problems

with before was often and very suddenly giving me spasm attacks which

also made me cry with the pain. I have never experienced pain like it

in my life and now know what it means when I've heard people say they

cry out in pain. I felt my whole body was collapsing and even with a

team of four specialists i.e. rheaumatologist, opthamologist,

infectious disease specialist and gynaecologist and their staff of

five other doctors they couldn't come to a decision as to what was

wrong with me until day 9. I was diagnosed with Reactive Arthritis,

Entrapped Nerve in the left thigh, a possible spinal infection and

tendonitis in my elbow and a fibromyalgia flare up. During the month

I was in hospital I had four upper urinary tract infections.

I was told a third of the people who get Reactive Arthritis never get

it again, a third have occasional flare ups and the remaining third

have it ongoing for the rest of their life. Unfortunately I was told

last week by my rheaumatologist that I'm in the ongoing category.

I've been lurking on this forum for most of this year but found I was

having difficulty relating to others on this forum because America

tends to have a different view on Reactive Arthritis than what

Australia seems to and I was having trouble understanding some of the

things the lovely people on here talk about relating to Reactive

Arthritis.

I would very much appreciate it if you would email me and if you don't

mind give me your phone number. I'd love to be able to talk to

someone else who has Reactive Arthritis so I can learn to understand

it and live with it the best way I can.

For the Reactive Arthritis the medication I am on is, Pyralin

(Sulfasalazine) 500mg x 3 morning and night, and Celebrex 200mg x1

morning and night.

My email address is leanne_555 (DOT) com.au

I'm unsure if will allow my email address to fully print out or

even if the moderators allow me to provide a personal email address

but under the circumstances I hope they can appreciate the hardship I

have experienced in finding a fellow Aussie with the same illness as I

and excuse me for breaking a rule. If my email address doesn't print

out then I will post another message with my phone number, I know it

isn't wise to put phone numbers on the web but desperate situations

call for desperate actions.

I look forward to hearing from you.

Leanne

[Guest guest]

Thanks so much ,

I managed to get an appointment with my GP this morning and he has put

me on Prednisone for a month, so I am hoping that will calm down this

severe flare - otherwise I fear for my sanity! lol (only half serious).

I am looking forward to getting to know everyone as the days pass.

Thanks again for your reply and welcome.

Di

[Guest guest]

>

> Hi Sue

>

> Your reactive arthritis followed a very similar path to mine, I

woke

> one morning with a sore left ankle by the end of the day it was too

> painful to walk on it, within a week both my ankles, my right hip

and

> my left thumb were all hot swollen and red and the pain was

> unbelievable. And so began my long long journey and battle with ReA

> and the subsequent spin offs to it.

>

> I cannot take Celebrex or any NSAID, in fact there isn't a lot I

can

> take now although my doctor is always looking for something to

work.

>

> The latest flare of Ankylosing Spondylitis is acute and so much

like

> the ReA when it started - pain wise, really intense and making me

> miserable - this morning it woke me at 3.30 am and I have been up

> ever since (it is now almost 11.33pm Monday night).

>

> It is very comforting to find people who know what you are going

> through and to exchange ideas for treatment, what may work what may

> not etc.

>

> Thanks so much for replying to my post,

> Di

> Hi Di,

It really is incredible how close your symptoms are to mine. I was

skeptical for a long time about whether my rheumy was right about my

diagnosis, but reading things like your post really makes me feel

more comfortable that he really does know what he's talking about.

(heh, heh, Im so trusting..)

Do you take anything for pain when you are having problems? I do

have pain meds I can take, but I reserve them only for when the pain

is next to unbearable.

How long have you had ReA?

Sue